It's not about my age or the change of address
Or even changing
It's about a feeling of strength inside
and having more to give
and loving myself and
sharing myself
Sharing a quote, cat pic, or youTube video
Sharing indignation over injustice or inconvenience
"Oh man!"
"WTF?"
And finally knowing why I was given
This brain
This body
This heart
Tuesday, October 14, 2014
Life
Remembering the last night at home
scared of failure
Unsure of living with a roommate
Huge changes
And now I sit alone in my apartment
Huge changes
Because her room is empty
The family has collected her belongings
We attended services and said our Goodbyes
My mind flashes to when I told her that I loved her
and she said she didn't know but that she loved me too
pure joy
As she faded away, my dedication level was elite.
Staying up, asking questions, checking in.
Fearing, dreading, hoping
Love all around between myself and her carers
Enlisting family support
And praying, praying, praying
Please God let her go here
Here where we chatted and had snacks
Here when I texted when she couldn't hear what I was saying
Where she developed her own life
Not in a nursing home where this happens every day
and she might be alone in a room with no love
That can't happen
And on that horrible beautiful morning,
She departed and set herself free
And I exhaled with relief
Feeling as if I lived a life in a month
A life, actually in five days
But knowing the strength that she gave me
Will help me conquer the world
scared of failure
Unsure of living with a roommate
Huge changes
And now I sit alone in my apartment
Huge changes
Because her room is empty
The family has collected her belongings
We attended services and said our Goodbyes
My mind flashes to when I told her that I loved her
and she said she didn't know but that she loved me too
pure joy
As she faded away, my dedication level was elite.
Staying up, asking questions, checking in.
Fearing, dreading, hoping
Love all around between myself and her carers
Enlisting family support
And praying, praying, praying
Please God let her go here
Here where we chatted and had snacks
Here when I texted when she couldn't hear what I was saying
Where she developed her own life
Not in a nursing home where this happens every day
and she might be alone in a room with no love
That can't happen
And on that horrible beautiful morning,
She departed and set herself free
And I exhaled with relief
Feeling as if I lived a life in a month
A life, actually in five days
But knowing the strength that she gave me
Will help me conquer the world
Saturday, October 26, 2013
A year later
A year later, I don't know if I could be the spokesperson for where I live.
But I know that I speak up more for myself
A year later, I still don't know my life's path
But I am more accepting of that now
A year later, I haven't changed at all in some ways
Because what I needed to change the most was how I treated myself
A year later, I still give to others
Even more than ever, still as automatic as my huge grin
A year later, I realize it's not about the place or situation or life being perfect
Or even learning lessons from imperfections
Sometimes life is hard, and that's just because it is
Not because I didn't try
or because I need to learn a life lesson
But because sometimes life stinks
And the only way to react is to hold your nose
and keep going
But I know that I speak up more for myself
A year later, I still don't know my life's path
But I am more accepting of that now
A year later, I haven't changed at all in some ways
Because what I needed to change the most was how I treated myself
A year later, I still give to others
Even more than ever, still as automatic as my huge grin
A year later, I realize it's not about the place or situation or life being perfect
Or even learning lessons from imperfections
Sometimes life is hard, and that's just because it is
Not because I didn't try
or because I need to learn a life lesson
But because sometimes life stinks
And the only way to react is to hold your nose
and keep going
Wednesday, October 2, 2013
For World CP Day
I have a wish list:
For everyone with CP to be able to live, think of a goal and pursue it without having to overcome additional obstacles, and without having to prove themselves. A question should be "How can I help you achieve this goal?" not "How are you going to do that?"
I wish that the medical community didn't give up after a certain age, because cerebral palsy doesn't disappear. Everyone deserves to perform at their maximum and have the right to determine that for themselves, not relying on a doctor or an insurance company.
I wish that people with CP that need assistance did not need to be dirt poor in order to be eligible for assistance or stay dirt poor to remain eligible
I wish that cerebral palsy did not mean to some I lived a completely different existence and cannot relate to others.
I wish to ease the burden of always being positive
I wish for others with CP to be able to tell their story; the good, bad, funny, sad, angry, embarrassing,
to eliminate shame.
I wish for better public transit options
I wish for more of everything; more awareness, more research, more communication, more conversation about what needs to happen, and more hope and faith from society that people with CP will lead a full, self-determined life.
For everyone with CP to be able to live, think of a goal and pursue it without having to overcome additional obstacles, and without having to prove themselves. A question should be "How can I help you achieve this goal?" not "How are you going to do that?"
I wish that the medical community didn't give up after a certain age, because cerebral palsy doesn't disappear. Everyone deserves to perform at their maximum and have the right to determine that for themselves, not relying on a doctor or an insurance company.
I wish that people with CP that need assistance did not need to be dirt poor in order to be eligible for assistance or stay dirt poor to remain eligible
I wish that cerebral palsy did not mean to some I lived a completely different existence and cannot relate to others.
I wish to ease the burden of always being positive
I wish for others with CP to be able to tell their story; the good, bad, funny, sad, angry, embarrassing,
to eliminate shame.
I wish for better public transit options
I wish for more of everything; more awareness, more research, more communication, more conversation about what needs to happen, and more hope and faith from society that people with CP will lead a full, self-determined life.
Sunday, September 29, 2013
I'm in the grey, and that's okay, it's just hard sometimes
I can walk but not till age six
I had surgeries that tried to fix
my feet with limited success
I'm only understood by those I let know me best
I work shifts that seem like a breeze
But maintaining a joyful attitude does not come with ease
When I'm tired and my break's late and it's not my turn
Fairness is not my body's main concern
It's screaming to sit down or have a snack
I can't block it out or argue back
I get what it looks like that I don't understand
that they have to deal with what the managers demand
I hesitate to tell anyone how I feel the next day
when I overdo it I'm the one that will pay
They won't see me struggle to walk, stand
Because I'm in the gray I seem "OK"
I can pass for able, what a gift!
Until something happens, attitudes shift
"Cashiering is tiring, even sitting down?"
It doesn't make sense, said with a frown
My body does not work typically
Balance, stamina, coordination are key
for life and for me are hard won
To do a little bit of what's usually done
I hide a lot of the pain I feel, It can't be explained just by conversation
Afraid I'll hear "Others have it so much worse" or "It's not that bad"
You see, that's what I tell myself too
But sometimes it's all too much
With feet sensitive to touch
reflexes can't compete with a scanner
and pressure to be neat and try to keep up
Both of my degrees fade away
I'm all I didn't do, should have tried, and all I didn't say
I'm looking for a place to belong
in this world that seeks a perfect fit
And I feel like my body's wrong
So yes I'm in the grey, and while that's ok, it's still CP
And it doesn't make sense that a person so blessed
could feel like an impossible mess
I'm not always a hero, not always an example
But I'm a pretty great person, whose gifts are ample
I had surgeries that tried to fix
my feet with limited success
I'm only understood by those I let know me best
I work shifts that seem like a breeze
But maintaining a joyful attitude does not come with ease
When I'm tired and my break's late and it's not my turn
Fairness is not my body's main concern
It's screaming to sit down or have a snack
I can't block it out or argue back
I get what it looks like that I don't understand
that they have to deal with what the managers demand
I hesitate to tell anyone how I feel the next day
when I overdo it I'm the one that will pay
They won't see me struggle to walk, stand
Because I'm in the gray I seem "OK"
I can pass for able, what a gift!
Until something happens, attitudes shift
"Cashiering is tiring, even sitting down?"
It doesn't make sense, said with a frown
My body does not work typically
Balance, stamina, coordination are key
for life and for me are hard won
To do a little bit of what's usually done
I hide a lot of the pain I feel, It can't be explained just by conversation
Afraid I'll hear "Others have it so much worse" or "It's not that bad"
You see, that's what I tell myself too
But sometimes it's all too much
With feet sensitive to touch
reflexes can't compete with a scanner
and pressure to be neat and try to keep up
Both of my degrees fade away
I'm all I didn't do, should have tried, and all I didn't say
I'm looking for a place to belong
in this world that seeks a perfect fit
And I feel like my body's wrong
So yes I'm in the grey, and while that's ok, it's still CP
And it doesn't make sense that a person so blessed
could feel like an impossible mess
I'm not always a hero, not always an example
But I'm a pretty great person, whose gifts are ample
Monday, September 2, 2013
To live
Sometimes I want to prove everyone wrong, pursue a degree in mathematics just to prove I can, get my PHD so I can be "Dr. Mel." But more often than not? I just want to live my life doing things I want to do. I want it to be okay for me not to know what I want to do with my life. I don't want to always question whether I am doing enough or having the right attitude. I want to be happy with myself and not have to convince other people I'm happy with myself. I don't want to feel pressured to resolve ALL of my issues in my life in order to be successful. I want to try and then try other stuff and not like some of the stuff I try so I try something else. I just want to be. Earn a living, come home to my cat, maybe have some friends over, take a nap, rinse, repeat. To be able to make a mistake, learn from it, and move on. To be believed when I say that I am doing the best I can today. I know that not everything I have been through makes sense, or not everything I feel is logical, but this is my journey, life as I see it. This is my reality. It's not objective, it's not "big picture." It's the life story of a kind-hearted, brown-eyed, you-tube, commercial loving person. I want to live in this reality and be ok with that.
Sunday, June 2, 2013
Thriving
It's easy to forget, in daily life, that something amazing is happening. I see my parents about once a month, and I am not falling apart! (Wow) I'm realizing that I was independent all along- or as independent as my environment would allow me to be. (Sometimes, no way was I going up those stairs again.) I'm working at a different store wearing the same ridiculous outfit and although it is not the "home" that my old store was, the one where I grew up through high school and college, where I encouraged co-workers as they graduated from Western and continued in life, it's okay. It has an elevator. (What is up with me escaping stairs all of a sudden?) I'm a lot of the time the neat, calm person I never knew was in there. I'm still my same emotional self, but I'm starting to see its purpose.
At the same time, life feels the same. I had this expectation that suddenly at a certain point everything would be AMAZING! I would be social, and outgoing, and accomplished! I would write that resume, find that job, write that book. I will. Just because I am not doing those things at this moment doesn't mean my life is not AMAZING! Maybe more so my life is amazing. Little things happen every day. I get tired, I become frustrated, I forget things, I drop things. I underestimate the difficulty of life and think that everything should be perfect by now and I should know everything. Months will go by and life will be hard, not due to lack of skill on my part, but because life just gets that way. Everyone's life has a different path. It's an individual journey with lessons to be learned independently. I try not to compare myself with other people, because my journey has been hard but everyone's "hard" is different. It's not about convincing yourself or anyone trying to convince you it isn't hard. It's about developing skills to get to the other side, and might I add being gentle to one's self in the process.
At the same time, life feels the same. I had this expectation that suddenly at a certain point everything would be AMAZING! I would be social, and outgoing, and accomplished! I would write that resume, find that job, write that book. I will. Just because I am not doing those things at this moment doesn't mean my life is not AMAZING! Maybe more so my life is amazing. Little things happen every day. I get tired, I become frustrated, I forget things, I drop things. I underestimate the difficulty of life and think that everything should be perfect by now and I should know everything. Months will go by and life will be hard, not due to lack of skill on my part, but because life just gets that way. Everyone's life has a different path. It's an individual journey with lessons to be learned independently. I try not to compare myself with other people, because my journey has been hard but everyone's "hard" is different. It's not about convincing yourself or anyone trying to convince you it isn't hard. It's about developing skills to get to the other side, and might I add being gentle to one's self in the process.
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